As a young single mum, with a premature baby, Candi knew that things were not going to be easy. But she couldn’t have imagined how tough it was going to be
I had a difficult and very complicated pregnancy with Summer, and her birth was very traumatic. Born at 32 weeks (eight weeks early) weighing just 4lb, she needed to be kept in the special care baby unit at King’s College hospital.
Whilst she was in the SCBU unit she seemed fine, had no jaundice and seemed to feed ok. She was discharged after three weeks. That first week at home was lovely, with the exception of her vomiting her feeds. Her health visitor saw her and didn’t seem worried even though she had started to present with jaundice and vomiting, her weight had also dropped. No one seemed to be worried and they all just told me that it was because I had a very small premature baby and I was a young first time mum. I didn’t question it because I thought these people knew what they were talking about.
At five week’s old, Summer’s skin colour was showing jaundice; she was taking around six ounces at every feed but vomiting it back again; her stools had also turned to a white clay like colour with a terrible smell. We took her to A&E where the doctor thought she was suffering from reflux and prescribed her medication to help her stop vomiting.
By the time she was eight weeks old, I had been researching her symptoms and I knew that we needed serious help. I presented her in A&E again and this time saw a different doctor who said that he was contacting Kings paediatrics team for advice. Within half an hour Summer had a split bilirubin blood test and we were sent home to wait for the results. That evening I had a call to come back to the hospital for the results. On arrival the doctor called us into a side room and told me that Summer had biliary atresia (Splenic Malformation) and that she would be admitted the next day for a biopsy to confirm the diagnosis.
The results confirmed the diagnosis and we were told that a Kasai would take place to see if they could save Summer’s liver and stop the damage. We were hopeful that this would work but unfortunately it failed.
Following that surgery, Summer was in hospital a lot, she had poor weight gain, cholangitis, nose bleeds, was terribly jaundiced, had ascites and cholestatic pruritus. Along with these symptoms she also had vomiting, fatigue and abdominal pain. Her doctors were very clear that Summer was probably going to need a transplant; they originally told me that she may not reach her second birthday without one.
Hearing this made me feel numb and I was in a bad place. I have always been a big supporter of organ donation but being a type 1 diabetic I can’t. I just never imagined my baby would be on the list waiting for a donation.
I never imagined this life for my tiny baby. I felt very alone, none of my friends who had babies had these issues so I felt very isolated. Summer was poorly most days so we didn’t venture out too much and when we did, I had negative comments. I remember being told by one lady in the supermarket that I needed to seek help for my baby because she looks ill. And one of the mums at the baby sensory session I attended, told other people that Summer had hepatitis C and no one wanted to let their babies play with Summer. It was a very difficult time for me. I just wanted Summer to get better, and I wished I could take it all away.
By the time she was two, Summer’s liver started to show signs of end stage liver disease and she was placed on the transplant list as an emergency. When we had her transplant assessment we were told that her blood group was just 1% of the UK, which would make it a little harder to find a match. We were given just weeks without her being hospitalized to wait for a liver. It’s something that I will never really get over.
The day of the transplant is etched in my mind. Summer was so poorly. We had been brought into the hospital by blue lit ambulance after receiving the call from her transplant co-ordinator. We arrived at the hospital shortly after 8pm and then we had to wait for news on viability. At 6.30am three surgeons came to see me. I sat and listened to what they had to say, the liver was a match, Summer had been chosen to receive the new organ. They put a consent form in front of me and a pen whilst they explained the risks and what could happen but that they would keep Summer as safe as they could. I remember holding the pen and wishing someone else could sign it, for someone else to take that responsibility away from me.
As soon as I signed that tiny piece of paper, we were off. I remember carrying Summer, who was upset and listening to Charlie and Lola on my phone. She was crying because she was scared of the men all dressed in green scrubs and hats. Walking through that hospital was the strangest moment, all of a sudden everyone in the halls seemed to be staring at us and watching. We finally arrived at the theatre, I told Summer I loved her and that she had to come out again so I could be her mummy. She was still crying as the anaesthetist gave her the first part of anaesthetic, I had one last hug and kiss… I had to let her go with them through those doors.
I stood outside those doors for what felt like forever, even though in reality it was only a couple of minutes. I stood there until I could no longer hear Summer crying for me. A lady poked her head out of the theatre and nodded to me and that’s when it hit me… that’s when I cried and let out that morning’s emotions. I walked away whilst waiting for any news from inside that room. I decided to go to Mothercare to completely spoil Summer with new teddies, blankets and a story-telling Winnie the Pooh Bear.
I didn’t see Summer again until around 8.30pm. she was so small on the bed, covered in wires and surrounded by beeping machines. The nurse explained to me that things had gone well and that Summer was extremely lucky to have received a full organ.
That’s when it suddenly hit me and I felt stunned and shocked, because until that point I hadn’t actually thought about another family and what they were going through. I knew that the full organ would have come from someone who was small like Summer, which meant that a family was grieving the loss of a child. It made me feel the saddest I’ve ever felt. I’d been celebrating my child who needed this organ to live yet another child had been taken to give that gift. A family in all of their grief and hurt had decided to donate that child’s organ and they will never know how grateful I am. Every year on Summer’s transplant anniversary I celebrate two lives – my own child and an angel child who I never knew but lives with us.
Eleven years later Summer is here, looking after that gift of life and trying to stay as healthy as she can. Covid has made life harder for her but she still smiles and carries on.
Every day I think of our donor family and wonder who they are, I wonder who your little angel was and what they were like. I’d love to thank them in person one day and tell them how grateful I am. To tell them that what they did was amazing and thanking them would never be enough.